Personal Stories On Topics That Matter

Staying Home: Supporting An Elderly Parent's Wish

By Jane Flint

My mother, almost 95, lives independently, as we say of the elderly living alone. Here in California, her low-rent senior housing costs just under a thousand dollars per month. When she was a schoolteacher in the Midwest, our family of five all lived on a thousand dollars per month. Although she is frugal to a fault and very clever in guarding her monies, she never expected to live this long and there was no long-term care insurance when she retired. In any case, she refused to talk of death or dying or planning for either until they were upon her, and even now is hesitant.

She’s still healthy by the standards of being elderly. But she’s frail, and can no longer think away the inevitable. Besides rent and food, her monthly income just covers a once-a-week, half-day private home health aide to help her bathe, shop, and clean. One set back could send her spiraling. She has one choice now, to die at home.

Fortunately, in a way, this matches her own desires. Her town is hers. She chose it as her dream place to live when she retired, even though she knew no one there. Now, thirty years later, she has many friends, albeit fewer by the day. But she still maintains a small book club, a scrabble buddy, and people young enough to be her Lifeline responders. She knows the hospital and the grocery stores, and the people in the library and post office know her.

So why not stay at home? Isn’t that, really, what we all want – to die, preferably in our sleep? At home? In our own beds? Isn’t that how it's been done for centuries?

Except that nearly every process, custom, system, and service that currently supports the elderly seems to work with a very different set of assumptions. In our economic culture today, every human milestone is being mined for profit: the mortgage bubble became the school debt bubble. Companies are eager to data mine the shopping habits of young women to capitalize on the milestone of pregnancy.

And now it is the cost of dying that is expanding. Home care agencies, while they are making the work of home health care providers better, are also building in more profits and therefore costs. Doctors are expanding their markets to own these agencies, in addition to the specialty clinics, which their partnerships may also own. If agencies follow the model of specialty clinics, we can all look forward to markedly increased expenses for end-of-life care services.

Add to this the myth of the “miracles of medicine” and the unspoken reality that many “hospitals don’t do death.” The way to have choice is to have money but at a price that is beyond the means of most of us. The way to get help is to have no money, but the trade-off is to synchronize spending dollars down with the moment of need and then accepting severely limited options.

Scratch a little deeper and you find assumptions about family: the family should take over. If they can’t, there’s something wrong with the family or the elderly person. If they can, someone, often a daughter or daughter-in-law, sacrifices career, friends and family to the care of the elderly person. Many families need to choose between end-of-life care for their parents and health care, schooling, and retirement for their children and themselves.

Friends who have lived through this stage of life have had their own unique set of circumstances. My story is about living with the changing family dynamics wrought by my aging parent, against the current backdrop of economic reality and expectations of society.

We are three: my older brother, my younger sister and myself. We all work and see ourselves needing to continue work well into our sixties. An additional complexity is that our mother, who thankfully suffers no signs of mental incapacity, is a challenging person: willful, determined, desirous of control. As a young adult, one of us disowned her and then came slowly back to her. One of us bonded tightly and now needs to separate. The third decided long ago that an email once a week and a visit once a year would suffice for duty. One sibling lives at considerable distance. My mother has repeatedly declined a long-standing offer to live in the in-law apartment one of us maintains, and wasn't ready for residential care when she had a bit more savings, so the other two of us remain a minimum of three hours away from her by car.

Despite our differing relationships to our mother, we all came to an agreement after her last health crisis. A fall two months ago made it clear that staying in her own apartment is her last and only choice. Whichever of the three of us is physically closest and most able to go to her at the time of crisis will deal with it.

There is comfort in knowing the three of us agreed we don't want what happens at the end of life for our mother to estrange us from one another. But as I sit with our decision, I’m feeling uneasy. I realize that whoever happens to respond to the last crisis will have the additional burden of working out all the details in real time.

Has she, in a pique of anxiety, overwritten her DNR? Is it better to call 911 knowing that could lead to great expense and her dying in a hospital? Or is it better just to be caretakers? Are there personal liabilities for that decision? What would a commitment to caretaking look like and for how long? None of us can afford extended time away from work. None of us have sufficient savings to fill the financial gap. How much is she willing to cede decision-making to any of us in crisis? How would decisions be negotiated between her and us during a crisis? What decisions might lead to one of us having to inform her of and implement on her behalf a choice she will refuse? How much can we really ask her local network of friends, elderly themselves, to play a role?

If I am the one on hand, how will I deal with the not-knowing? With the doubt? Betrayal? Second guessing? With the judgment of others who will say, “You should have...” “Tough love...” etc. Will I empathize or rescue? Resent or pull away? Will I be able to ask my siblings for their participation? Will I know what to ask for? Can their help come in time? Will they be willing? Where will we each be in our sometimes stormy, sometimes friendly relationships with our mother? Each other?

I don’t know. But today my plan is to use this time before her end to prepare myself. Is there such a thing as an “intuition push up” or a “sensory crunch” that I could be practicing? What are the exercises for breathing, trusting, letting go that will work for me? Can I really know inside myself and accept that her end could be incomplete, imperfect, conflicted for me? Could I imagine passing the responsibility for what happens off my shoulders to be held, instead, by the fact of my humanity?

What I want to be is ready to be there, willing to hold her hand, able to forgive myself if love eludes me in the moment and I feel like I'm acting out of necessity or duty, able to feel whatever love is there.